Tuesday, July 26, 2011

More Than Autism

"It's okay." Our mantra. A hundred times a day, it seems. We say this to our children when they start to resist something new or when they are being made to do a task they detest, and when the first few bouts of a tantrum start. I really do not know if these two words work and make our children realize and understand that it really is okay to go inside the classroom without mama inside. That it is really just okay that they don't get what they want right away, that it is really just okay to listen to the noise the surrounding makes even if it hurts their ears, that it is just okay to sit and wait for anything to start or move on.

Most often than not, I think, in my case, I am comforting not my child but myself. I am telling myself that it's okay if Garret starts to scream when he cannot wait. I am telling myself that it is okay that I will be firm with him when I say no. I am reassuring myself that it really is just okay to feel anxious, insecure and inadequate when the worst happens. It's okay even if Garret is having a bad day. It's okay that I sometimes feel helpless and can't hold it all together. It is just perfectly okay. Even if numerous times my insides are screaming to say," It is not okay! I am tired! And I just want you to wait and behave and do as I say!"

In reality, these two words does seem to work. It's like a switch the comforts our children to calm down when they are overstimulated or when they just act up. In the end, all that Autism brings to the table-- the weak impulse control, the not-able-to wait, the language impairment that contributes much to the tantrums that we so dread, is what it is. There is no miracle immediate cure for all of this. It is there for a reason. Autism is present in our lives because of a deeper purpose. And whether we are able to unravel its reasons or not determines our ability to sustain our strength for our children. I am still learning. We are still learning every single day. Yes, some days I do not want to learn. And I insist that it is NOT okay. Autism is not okay. And the WH- questions come up again. But I cannot let those days bring me down. I cannot let those days pull Garret deeper into this world of seclusion and confusion. I have to realize and see with new eyes every single time that Garret's Autism is just a part of who he is and not who he ALL is. My son is MORE than his Autism.

I was browsing through Google a few weeks back to search for new ideas of Autism Slogans for our campaign for our ASP chapter in our city. And I found one that said, "I AM MORE THAN AUTISM" in bold letters in the center. Surrounding the words were more characteristics describing the more optimistic, bright and beautiful child with Autism.

Now I am reminded looking at it that indeed my Little Prince IS MORE than Autism. And this declaration will pull me out of the dark times. This affirmation will bring us to the light. And I won't need to tell myself, "It's okay." From now on, I will tell myself and live the words, " Garret is MORE THAN AUTISM". He is CHARMING, FUNNY, MISCHIEVOUS, SMART, GENTLE, PURE, HONEST, and BEAUTIFUL. He is all these and more. And THESE make Garret not just Autism. He is our son. He is God's gift to us. And HE IS PERFECTLY OKAY. And why shouldn't I be okay?

Sunday, July 24, 2011

I Wish God had an FB Account

"How sweet it is to be loved by you...", the music from the videoke channel sang out or rather played. Of course, we were supposed to sing it. We didn't know the tune of the rest of the song though.

Andro and I just got home after sending off the boys' speech therapist to the Supercat Terminal. His next visit will be next month. We really had a good day. Check that. We had a great day. And if God had a facebook account, his wall would have been filled up with my message of thank you's and a list of all the things I am grateful for. But He doesn't, so my blog-writing will have to do.

My mom told me I better get back to my prayer life as I did when I was in high school so I can sustain my strength and resilience with all that our family and I are going through, Autism and all. By prayer life, I mean spending at least an hour every night talking to Jess. For those who were alumnae of my high school, you would understand who I am talking about. But for the rest of you, I'll explain briefly.

When we reached our senior year, our school, run by nuns, naturally prepared a 3 day retreat for us. And during the retreat we were taught by the retreat masters how a personal relationship with Jesus makes us more in tuned with him, with ourselves-- with how to better ourselves as human beings which in turn will make us better persons. And this starts with calling him a more personal name, no different than what we call our siblings or closest friends by their nicknames rather than their birth names. So, we called Him, Jess. Indeed it was like talking to a very dear friend no matter what time of day. It was like writing on a personal diary and pouring out all that transpired during the day- our emotions, our joys, our bad days, everything.

So now that you understand, let me continue. I answered my mom that maybe I didn't have the routine with Jess that I used to have many years ago, but I still talk to him. Maybe I don't call him Jess anymore. I refer to Him as the universe, the skies, the earth, the wind and the sea. And I speak to him constantly when I write. I do feel I am closer to him when I type these letters and see them come to life on screen. And when I do write, I honestly feel I am giving back what was given to me-- all the blessings that come from the trying times and wonderful experiences in my life. All of us, especially Autism mothers need an outlet by which we can express ourselves, de-stress ourselves, make time for ourselves and ultimately take care of our own souls. I think, no, I am declaring that this is my personal time, my personal de-stressor, my outlet, my sense of relief and my peace-- my communion with the Universe.

And so right now when I feel so much joy at what our two boys have achieved yesterday during our speech therapy, and the progress we are having at home, I badly wish God had an FB account. So I can bombard his wall with songs of gratitude and praise. Many of you may say that surely even without Facebook, God hears my prayers. But we all know why FB clicked with us human beings-- you get an immediate concrete response from the people who are part of this social networking community. So maybe the reason that I want God to have an FB account is so that I can get a concrete reply, an affirmation and a clear validation of what I am pouring out to him right now.

And this is what I would be bombarding his wall with:

1. Thank you God for all the teachers and therapists of our two boys who have given not only their time and knowledge and expertise to us but most importantly their heart and soul, treating our children as if they were their own.

2. Thank you God for all the parents in our center and all the other parents-- friends who understand what we are going through, who make us feel that we are not alone, and give us strength and love.

3. Thank you God for all the challenges we are facing: difficult people, people who hurt us, disrespect us, judge us, they have given us the opportunity for us to build our character, for us to choose to be better than what and who we already are.

4. Thank you God for family. Their grip on our hands keep us steady and firm in our faith in you, in our sometimes faltering hope for a promising future.

5. Thank you God for the people who help us take care of our two boys so we can go on having productive personal lives.

6. Thank you God for my life partner. We are learning everyday. Learning is painful sometimes but the rewards are great and pain is replaced by something that is beyond beautiful.

7. Thank you God for: Garret spontaneously asking me for a piece of Graham Crackers instead of grabbing it himself. He is learning impulse control and asking for help. Morgan paying more and more attention, making more and more eye contact, being more and more aware of his own self and the environment and speaking little by little. For all the little achievements-- how greatly thankful I am.

8. Thank you God for my little prince and my feisty king, Garret and Morgan. They have brought meaning to my life-- to the life you have endowed on me. They have given me purpose. And because of them I am able to give back to life as I should.

9. Thank you God, for Autism, for everything that it has taught us-- understanding beyond human capabilities, acceptance in its purest sense, compassion beyond belief, and above all, Love that knows no bounds.

10. Thank you God for the gift of words. How else can I show my gratitude to you if not for the gift you have given me through each letter, through each written word.

I sat on the sofa watching the videoke channel. Garret sits beside me and I extend my left arm to embrace him. He doesn't complain. He smiles his princely smile. Morgan scoots to my right side. And the music goes on and on, " How sweet it is to be loved by you, by you, by you..." I am content, happy and grateful...just so grateful to be loved by somebody who holds the master plan way up there in the Universe. Yes, God loves me. God loves our boys. God loves our family. And nothing is as sweeter or more amazingly beautiful than this. There is no greater validation, affirmation or concrete response than this.

P.s. God, when you do have a Facebook Account, I'd like to put a music link on your wall. And the song is sung by James Taylor that sings, " I want to stop and thank you baby, How sweet it is to be loved by you."

Thursday, July 21, 2011

Some Good Things Never Last. But Great Things Await us...

We were visiting Papa Ching's grave a few days ago, Garret, Morgan, Andro and I. When the candles were lit, as expected, Garret was excited. The flickering and dancing of the flames just stimulated him so much he was jumping up and down hands flipping and flapping. We prayed for a little while. Morgan was walking around the newly trimmed grounds and finally stopping to sit at his favorite bench. After a few minutes, we decided it was time to go. "Ok, Garret let's go." He adamantly refused, "Ah!" coupled with a furious stomp of his feet. "Uh-oh", I thought to myself, knowing what comes next.

Waiting. Turn-taking. Impulse Control. Attention Span. Rigidity. Challenged Adaptability. These are just some of the issues we deal with everyday. Minute details it maybe for other parents. One silent glare or a reprimand may be enough for their kids to be compliant. But for us, it consumes our day. Most often than not, we are left exhausted. Our verbal reprimands are not enough. It has to be paired with physical control-- literally manipulating their hands to keep to themselves or to keep them from running off. And still, we do not know if they truly understand, if we have somehow made some sense in their world.

Sometimes, when light bursts through, when our kids are miraculously able to wait inside the car while papa is buying something from the pharmacy, we are ecstatic. A milestone achieved. One little achievement that means the entire world to us. When our child agrees without argument that it's time to go home and we have to pull him out of the mall when he was so enjoying watching the escalator run up and down with so much pleasure, and he goes with us without so much as an intense-energy reaction, we are relieved. We call for a celebration. And every single time this happens, we hope against hope that it will always be like this. We cherish this particular moment because we know that maybe tomorrow, the "good waiting" and "good following" won't be so good anymore.

This is where Autism is the most difficult for us. As much as our children require routine and consistency, the turn of events in real life are far from routine. The real world offers only change--the only thing constant. And we in turn have to constantly battle protecting our children from abrupt changes or most importantly prepare them for it. Still, there are times when there is no time left to prepare them. And this is where the tantrums and meltdown come. And our hearts get broken every single time. The walls are shot up and we cannot penetrate through them. We are then taught by our therapists and teachers to be firm and not give in. I've said this many times over-- easier said than done. But necessary. For our own sanity. but most importantly for our child to learn, just like any normal kid.

My mom came for a visit more than a week ago. And in one of our conversations, she confided in me how she saw Garret as being behind this thin wall or barrier of some sort from the rest of us. "He's a beautiful, wonderful, mischievous and smart boy.", she told me. " If only this barrier can be broken down..." I nodded with my heart and soul. She didn't need to finish her sentence.

Elaine Hall said, "We, parents of kids with special needs are the lucky ones. Our kids may never attend the best private schools or elite universities, but we can find a miracle in every one of their accomplishments, however small or great." This is the truth that we strive to live with everyday-- to be grateful for all the little things. But our stories sometimes tell the contrary-- the moments do come when we just break down and say to our children, to nobody in particular, to the walls surrounding us, to the universe perhaps, "I'm so tired. Why can't you just wait? For one second, can't you just behave?" I know I've been through my breaking point when I asked my little prince, "Maluoy tawn ka nako Garret." (Can you please give me a break, even if it's just one minute, Garret?) And of course, he doesn't understand what I'm trying to say. His world doesn't allow him to. And maybe he is also trying to tell me in his own way, " Mama, I am desperately trying to tell you something. Why can't you understand?"

Our afternoon routine includes driving around the city . During the drive, there are certain places Garret absolutely does not like to go to or rather turns he does not want the driver to make. When he's set that we drive straight down the road, he complains rather loudly when we make that particular turn. As to why? I have no idea. But it certainly makes sense to my little boy. He gives a quick scream with a quick slap on my arm. So every single time we are nearing the turn, I soothe him, " It's ok to that we pass this way, Garret, Ok?" I repeat this over and over. Several times, it works. He understands and controls himself from reacting intensely. These are the times I celebrate. We won over rigidity this time.

I remember when a new mall was built in our city, we first drove by it and told Garret, " Look Garret, it's a nice place. Let's go inside next time, okay?" Yes, new places don't suit him well. At first, anyway. The next time, we just drove around the parking lot letting him feel the new surroundings. Naturally, he complained. Again loudly, " Ah!, Ah!" " It's okay, we're just driving around. We'll go in next time." Finally the next time arrived. With Morgan tagging along carried by his caregiver, Garret was a bit confused. He didn't know if he wanted to go in or to remain outside. So his caregiver carried him, all the while we were comforting him that the new place is okay. While I did my groceries, he just stayed just outside the grocery and took in the place-- the smells, the sights, the sounds, the feel of glass- everything. Let's just say that the rest now is history. Whenever we go now to our mall, he runs ahead leaving us behind.

He immediately goes to the escalator and gazes at the moving machine as it goes up and then goes down. He runs around and squeals in delight. The people around usually find him adorable. Some find it annoying that he bumps people in his excitement. But when I see him being in this happy place, the rest of the world seems all like a blur. There is only Garret grinning. And that's all that matters. Of course sooner or later, the bubble starts to burst when we decide that it's time to go home. We walk on ahead and call after him, " Let's go Garret." Of course he doesn't go without a fight. Naturally. During these times, we have no choice but to carry him. This time, his papa carries him on his shoulders. He loves this. We hope it distracts him or makes him momentarily forget that we took him away from his favorite escalators. He still whines and complains. His reaction subsides eventually when we reach our vehicle and drive away. Whew! I draw a big breath, glad this episode is over. In the end, I always remind myself that we had a good time. Garret enjoyed his day. We had a good day, not a perfect day, but a good day. And that is enough for us.

With all that has happened for the past week or so, our life was far from routine. Changes had to take place and we are now undergoing major adjustments. For Garret most especially. He copes with it the best way he can. We cope with it the best way we can. There are very difficult moments. But there are also miraculous, wonderful breakthroughs. Some good things never last indeed. Then I realize that maybe these changes had to occur for Garret and for our family so GREAT things can come into play. As much as we struggle everyday with rigidity, challenged adaptability, impulse control, more so with unexpected changes in his routine- with the people around him, I know I have come to terms that this is part of who Garret is--- what Autism has brought into our lives. Both a blessing and a burden. But bearing into mind that the burdens we face only make us stronger. Garret needs US to break down this barrier that separates his world from his. I'm optimistic that yes, the barrier can be broken down. We just need to take that extra step, to exert that extra effort, to give even the last ounce of strength we have for him, so we can understand what he is desperately trying to tell us. So that we can make him understand and maybe we can calm his thoughts and regulate his senses to finally be able to adapt to this constantly changing world. But most importantly, so that we can let him understand how much we truly, truly love him. Because, in the end, great things-- love, perseverance, acceptance, await us. Our journey with Garret and his Autism may be the greatest thing that happened to us.

Thursday, July 14, 2011

New Beginnings

More than a week ago, Garret was down with flu. As you can imagine, he was weak and just wanted to be cuddled as we slowly moved in the rocking chair. I sang to him nursery rhymes to soothe his aching body. Finally with the gentle breeze fanning us through the window, he fell asleep.

A few days after Garret recovered, we were faced with a new challenge and new realizations were to be revealed to us. For me particularly, it tested my character, the depth of my compassion, and my ability to stand firm and rally change. The experience challenged my belief that people are essentially good. Well, not anymore. I realized that as much as human beings are innately good, they are equally capable of evil things. Evil--such a strong word. But how else would you describe betrayal and pretense for 5 years? How do you even begin to come to terms with how a person you treat almost like family stabbing you in the back? How do you show compassion for a person who has shown you nothing but ingratitude even contempt? I remember once more how I shared to my students in Counseling class many years ago the Indian Prayer, " Grant that I may not criticize my neighbor unless I have walked a mile in his moccasins." Now I repeat this to remind myself to choose compassion over hatred, to choose to take the high road, to show strength of character amidst utter human weakness, to choose silence instead of boiling rage, to choose peace of mind, to choose righteousness instead of self-righteousness.

Fortunately, this particular episode has now passed and we are all in reset mode. And I can only be grateful for that. What could be more beautiful and refreshing than new beginnings?

Maybe this is what we all needed, for Garret most especially. He deserves all the good things in this life. He deserves to be calm, content, peaceful and happy. We deserve to have all these. It is time. With Autism in our lives I used to think nothing more difficult could be thrown at us. But then life sometimes has its own plans. God has greater plans. And with greater challenges, I see it now, with new eyes, we can only have greater strength, greater patience, greater character. What greater gift is there than this?

Beyond everything that has happened, I think the greater lesson here is not actually what I have chosen to do and be. The bigger question is, "Will I be able to pass it on to my two boys?" When the time comes in their lives, will I have been able to teach them the value of self-respect, dignity, loyalty and compassion? Garret and Morgan's world right now is confined to us, his teachers and therapists, his classmates, to family. But, when they are faced with people who not only have good intentions but quite the opposite, during that time, will I have given them the enough amount of strength to stand up for themselves? Will I have armed them with the belief that they do not deserve to be beaten and trampled upon? And in the end, when all is said and done, will I be able to teach them the most noble choice of forgiveness?

This is my constant prayer. My constant purpose. " Be sure everyday of what you are fighting for." Yoshio-Wada adamantly said to his grandsons. And most definitely, this will be what I will be fighting for, for my two boys to choose the high road-- to choose to do and to be men of character and strength.

We are all sitting in the family room watching the boys' favorite Barney video. Andro on the floor with Garret sitting on his stomach, Morgan comfortably seated on my lap. Garret is smiling giving his papa kisses not unlike butterfly ones. I ask once again for a kiss, and he readily gives it to me. I think we have never felt at peace and calm as now. I close my eyes and whisper, " Baruch Hashem, for all the great and worst things in our lives, for new beginnings. Thank you God.